The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

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Saturday, March 4, 2006

On March 4, 1988 -- 18 years ago today -- I got the diagnosis that changed my life.

My whole family remembers the day, my uncle's 52d birthday. When I got back from the doctor, I called where they were having the party and repeated to each of them what the doctor had told me. Good news, the problem had a name; bad news, the problem did not have a cure. But I was assured that doctors were working on it.

Little did any of us suspect on that fateful day 18 years ago that in 2006, we would still be waiting for science to provide even an effective treatment, much less a full-scale cure. CDC had a cure for SARS in 8 days -- 18 years later, I'm still waiting! Why?

Dr. Peterson suggests the reason is politics, and I'm inclined to agree with him. Over the past 18 years, government money earmarked for CFS research has repeatedly been diverted to research more politically-correct diseases. Even after an audit required that money to be returned to the CFS budget, a cursory review of the research attributed to CFS showed that some of "our money" was still being used for things having little or nothing to do with "our disease".

Sure, denying the existence of CFS as a valid physical illness saves the government a great deal in Disability benefits. But, speaking only for myself, the amount the government would be paying out for benefits (if they'd ever give them to me) is about equal to what I would be paying in in taxes if I were able to go back to work as a paralegal. To me, this looks "penny-wise and pound-foolish".

Meanwhile, I'm on austerity budget -- the government's not getting much in taxes from me, because you don't pay sales tax on groceries. After deducting the cost of my health insurance, my Schedule C earnings aren't enough to owe income taxes on. In what way is this beneficial to anyone?

I'd like to use the occasion of my anniversary to call for the government to finally take this disease seriously. Maybe by my 28th anniversary, they'll be able to give me a real future, instead of excuses.